A decade of psychiatric misdiagnosis: reconstruction and reconciliation

Obstetric Cholestasis (ICP) and Psychiatric Drug Exposure

I’ve had a few thoughts running through my head lately relevant to the themes I used to write about here. I doubt this is the return of any regular updating, but wanted to get some of this out to anyone who may still have me in their reader.

First, our son was born in late May, and he is absolutely healthy, vibrant and stunning. He is eight months old now, growing like crazy, smiling, laughing and bringing much joy to our lives. His big sister has taken to her new role in the family with gusto and we are all adjusting to life as a family of four.

Although he is here and we are now all healthy and recovered, his arrival was not without struggle. Late in pregnancy, at about 34 weeks gestation, I was diagnosed with a liver condition called obstetric cholestasis (or Intrahepatic Cholestasis of Pregnancy, ICP). It results in very high bile levels in the blood and poses a substantial danger to the baby, including extremely high risk of preterm labor (some estimates as high as 60-70%) and 1-2% stillbirth risk (which is astonishingly high compared to baseline rates). However, the bulk of these risks to the baby can be avoided if you deliver 2-4 weeks early. We found estimates that said this condition occurs in about 1 in 1000 US pregnancies, so it’s rare, but not all that rare. With numbers like that, you almost definitely know someone who knows someone who had this. Virtually the only presenting symptom is completely insane itching over your entire body. I was itching for several weeks before we figured out what was wrong, and I would not wish that itching on my worst enemy. It was truly horrid. I could not sleep. By the time I was diagnosed, a new body part was itching every day. My eyes itched. The inside of my nose itched. Nothing helped. It was such a strange and overwhelming sense of agony and loss of control.

With the diagnosis, our midwife was in agreement with us that our home birth was out the window. At 34 weeks, plans changed to an early hospital induction, sometime between 36 and 38 weeks with my previously-back-up OB. Suddenly, I was not going to labor and birth at home, where I felt safe, away from doctors and overzealous medical care, surrounded by smart and supportive women. I was going to be hooked up to IV’s, with an artificially induced labor that was less likely to succeed due to the necessity of an early delivery, trying my best to avoid the surgical birth I feared.

The birth actually ended up going remarkably well, though it took over three days and looked for a while there like my son would be born via C-section for a failed induction. But the doctors were patient (for doctors anyway) and with some amazing support from my wife, our doula, our homebirth midwife, and some lovely nurses, my son’s birth ended up being one of the most amazing accomplishments and experiences of my life, both despite and because of the obstacles we faced along the way.

I knew since even before I got pregnant that I did not want to birth in a hospital. One of the many contributing reasons that I wanted to stay as far from the hospital as possible was that, on the whole, I simply cannot trust doctors, in large part because of my experiences with psychiatry.

And, in a delightful ironic twist, I have strong suspicions that my years of unnecessary over-medication with psychiatric drugs are exactly what landed me in the hospital for my son’s birth.

To be clear there are absolutely no medical studies linking exposure to psychiatric medication with obstetric cholestasis, certainly not when one’s last exposure to psychiatric drugs was two years prior to pregnancy. But I was on tegretol for 8 years and Zyprexa for nearly two, both of which are known to cause liver damage. In addition I was on a rotating display of SSRI’s and benzodiazepines. That’s a lot for a liver to handle, and I believe it left my liver in worse shape, and less able to handle the stresses of pregnancy. Can I prove it? No. Will it ever actually be studied? Probably not. Did I tell or ask my doctor about my suspicions? No way in hell.

I chose my back up hospital precisely because they did not have access to records from my psychiatric care (and for their somewhat lower c-section rate). There’s no way I was going to head into a birth, especially a hospital birth, giving the doctors and nurses any reason to doubt me. I have no doubt that if they had known, I would not have been treated nearly as well, especially when, like a crazy lady, I insisted on continuing to labor without medication for over three days. I actually came to like and respect my doctor very much. She provided me with excellent care for a condition that many women have to research themselves because the doctors just don’t know about it. She genuinely respected us. I’ve found myself a few times lately wishing that I could tell her what I think led to the cholestasis, perhaps so that she could report it, or at least file it away in her head in case she started to notice a pattern. But I always stop. I’m not willing to risk it and the only other hospital in town has my records.

If you found this post and are in similar shoes, maybe by searching “ICP” and “psychiatric drugs” or “psych meds” or “zyprexa” or “tegretol,” know that you can contact me. I still read this e-mail even when I’m not posting. I’ll at least commiserate with you about that damn itching, and I can tell you that your baby will be OK.

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One Response

I understand your concern about the stigma and loss of credibility that come with telling a doctor about psychiatric medicines. I am, however, concerned about anyone counseling people not to give a complete medical history to their doctor. That previous use of medication may have had some bearing on your current condition and your doctor should know. It is a tough decision to make.